USHER IN A CURE: Help make a profound difference in the lives of thousands of children and adults
Saturday, September 19, 2020 was Usher Syndrome Awareness Day, and your voice helped make an impact across the country, and around the globe!
The Need for Action:
Usher Syndrome Awareness Day seeks to bring attention and raise awareness of the most common genetic cause of combined deafness and blindness. Usher syndrome (USH) is a rare inherited disease – passing from parents to children -- that affects at least 25,000 people in the United States, and over 400,000 worldwide. Most children with Usher syndrome are born with moderate to severe hearing loss. Vision loss is progressive and usually occurs at a young age or through adolescence. The need for awareness is heightened by the global health crisis we are all experiencing. The impact of a pandemic on a community that is already isolated lends greater urgency to our mission. For decades, adults and parents of babies born with Usher syndrome have been told “there will be a cure in ten years.” In the year 2020, a year elevated as the landmark for restoring vision, we are still falling far short. We will continue to stress this urgency and advocate for increased federal funding for Usher syndrome research to make treatments a reality.
Why September 19?
In 2015, the Usher Syndrome Coalition, an organization of individuals and families of children with Usher syndrome working to connect the global USH community, declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome.
Highlights from Usher Syndrome Awareness Day 2020
Official Recognition of Usher Syndrome Awareness Day:
State Proclamations designating September 19, 2020 as Usher Syndrome Awareness Day: Alabama, Maryland, Mississippi, Oregon, and Virginia. Special thanks to the members of our USH community who helped make this happen: Kathy Thompson (Alabama), Laura Ross (Maryland), Danay Trest (Mississippi), Meagan Moore (Oregon), and Girl Scout Troop 1673 and Peggy Borst (Virginia).
Rep. Jim McGovern (MA) submitted a Statement for the Congressional Record. You can read McGovern's statement here.
Thank you for sharing your stories through social media about living with Usher syndrome during the current COVID-19 pandemic. If you want to catch up on the stories shared, they are highlighted on our Instagram account (@ushcoalition). Look for the Highlighted Stories labelled "UshDay2020"
The Usher Syndrome Society will be exploring life with Usher syndrome through a series of heartfelt conversations with those experiencing Usher syndrome from around the world. They will be sharing stories throughout the year and the first story is available to view here.
Usher Syndrome Awareness Day in the Media:
Take a look at some events that took place in 2019 in recognition of Usher Syndrome Awareness Day:
September 14: Camryn's Race for Usher Syndrome | Roanoke. Virginia
September 21: Celebrate with friends and ProTactile ROCKS!! | New York City, NY
September 21: 5 Points Music Foundation to Honor Usher Syndrome Awareness Day with Ana Popovic and New Initiative | Roanoke, Virginia
September 21: USH One See 5K & 10K | Lafayette, Louisiana
September 21: Usher Syndrome Awareness Rally | National Stadium, Surulere, Lagos State, Nigeria
- USH Awareness Day Proclamation | Mississippi
- USH Awareness Day Proclamation | New Jersey
- USH Awareness Day Proclamation | Middletown, NJ
- USH Awareness Day Proclamation | Pennsylvania
- USH Awareness Day Proclamation | Wayne County, PA
- USH Awareness Day Proclamation | Virginia
- USH Awareness Day Proclamation | Minnesota
- USH Awareness Day Proclamation | Washington
- USH Awareness Day Proclamation | Ohio
Are you planning any other events around Usher Syndrome Awareness Day? Let us know and we'll help spread the word!
Thanks to your support and dedication to introducing the world to Usher syndrome, the Coalition is able to continue our work to help and connect all in our community. We look forward to celebrating this day with you.